Author: Vicki Neely

I have often heard that special-needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me that I “wear my heart on my sleeve.”

So my exposed heart gets hurt and the skin under my heart-covered sleeve is fragile.

And I become weary.

Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special-needs life” overwhelms me at times.

My child, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill require constant repetition.

Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over a delicate, yet mighty fortress which is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems.

Others practically live in a hospital, as I did for several years. Surgeries become commonplace.

Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that. Look.

Penetrating stares and flippant remarks seem acceptable and even appropriate.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But God doesn’t make mistakes. He chose Joshua for me.

His life is worth every single hard thing I must do.

Or hear. Or read. Or even ignore.

God’s grace enables me to turn the other cheek when I want to scream, “YOU DON’T LIVE MY LIFE!!!”

He has entrusted me with much.

Often the most difficult is not what I must do for him, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize that I am able because His power is made perfect in weakness.

And while my heart my lay open for all to see, I know Who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.

I enjoy decorating. Finding and placing and arranging things pretty. My house is now full of things I love from my childhood home that scatter memories of those I love and those waiting for me in Heaven.

I pin décor and arrangements on Pinterest – pictures of mantels and shelves, bookcases and walls.

And decorated coffee tables.

There was a day when my coffee table held pretty things. Strategically placed and dusted and shined.

Slowly, the coffee table became a place where I propped my feet as I nursed my babies. It has held finger prints of toddlers scaling its sides. It is now often sticky with cereal milk, or pancake syrup. It serves as a Yahtzee and Uno-playing table.

No beautiful coffee table books reside there, but instead a menagerie of stuff that manages to take up residence at some point on this four-legged stuff-holder: Southern Living, homeschool books, an IPad, ear buds, DVDs cases, Josh’s white rags, my tattered Bible and journal, pens, pencils, and various remotes (all in a pretty basket, of course).

Not that ALL of that is there at the same time.

Well, maybe sometimes.

But my coffee table reflects my life. Not only my life now, but how it has evolved.

From freakishly- tidy and arranged to functional and lived-in.

The table is scuffed and the stain is rubbed off in places. Feet places. Truth be told, we could use a new one.

I clean it, polish it, straighten things on it, and cull out unnecessary items. Sometimes I consider placing some pretty candles or an arrangement of books.

But then I think of the feet that will prop on it and decide to leave those things for the shelves.

Those can stay pretty. The coffee table for now will be functional.

I may or may not have years to come of “pretty coffee table”. I’ve heard moms say that when their children are grown and gone, and they can have things the way they want them. Or empty-nester moms with impeccably-decorated houses who say it wasn’t’ always that way.

But with my Joshua, I may always have a “child” around. And I hope to have grandbabies scale my coffee table one day in the future.

So I can gaze at Pinterest and lovely tables. Mine is fine for now. But I may go clean last night’s pizza sauce off of it.

This morning I read a blog post commenting on another mother’s article justifying her decision to abort her son because he had Down syndrome.

And then I made the mistake of reading the comments.

No one argued that the woman the article speaks of was right in her decision. I read of how children with Down syndrome are God’s special gifts and how the mother will have to live with her regret for the rest of her life.

Yet, my eyes focused on the words I hear so many times:

“I wonder how many babies are aborted and nothing was wrong?”

“These tests can be wrong. I know of women who were told their baby would have Down syndrome and their baby was born perfectly normal.”

Ugh- perfectly normal.

I often share my story about my pregnancy with Joshua and the prenatal tests. And the way I was presented with the “option” (double ugh) to terminate my pregnancy, even after I watched my baby son suck his thumb on the ultrasound.

And then – every once in a while…

There it is. And my heart lurches a bit as my ears hear the unspoken insinuation.

And while I am sure it is never intentional, my special-needs-mama-mind hears:

“It is more terrible for a child who is “healthy” to be aborted.”

“It might be okay if the child had Down syndrome to terminate the pregnancy – really.”

I used to say when I was expecting my children before Joshua, “I don’t care what (gender) it is, as long asit’s healthy.”

How things can change.

Joshua wasn’t born healthy. He has a genetic heart defect and open-heart surgery at 6 months old. Colds and RSV turned into pneumonia which turned into week-long hospital stays every couple of months for his first 3 years. He has numerous surgeries and all dental work – even fillings- must be done under anesthesia.

I read in another blog recently that “healthy” translates for most to “normal”.

My son is not normal to most. He was born with Down syndrome. He was later diagnosed with autism.

He doesn’t speak. He is not toilet-trained and currently functions at about an 18 month- old level.

My perpetual toddler.

His life swirls in a plethora of acronyms: His diagnoses include DS, ASD and CHD. He exhibits signs of SPD. He has an IEP, gets ABA and has been in both TMH and PLA classes.

Do these things make him and others like him not worthy to be born?

Why does the existence or even possibility of a disability qualify a child for extinction? Why was I not given this “choice” for my other “healthy, normal” children?

I had no “choice” and there was no “option”. No choice is easier.

God says to choose life. He created all life, therefore ALL life is worthy of existence.

But when I read or hear things meant as encouraging, yet somehow it still suggests that a child like mine is still not quite as desirable or quite as okay as another.

And it breaks my heart.

Not just my defensive “that’s-my-baby-you’re talking-about” heart, but for the hearts of those who can’t see him and those like him for who they are and not just for what they will become.

I’ve had friends tell me that during their pregnancies, Down syndrome was suspected. And they “refused” it, even turning in a doctor’s office from pictures of children with DS. And that God answered their prayer.

I hear shouts of “Hallelujah” and Praise God!“ when someone gives a testimony that their child was thought to have DS and didn’t.

I feel a little offended and a whole lot of heartbroken that others can’t see that my son is just as much a miracle as that “normal” baby.

My daily miracles include holding a soft, padded little hand that doesn’t feel quite like any other. I breathe in his sweetness and kiss little shell-shaped ears. I still can nuzzle a sweet little neck. In return, he gives me head-hugs and pucker kisses and cheek- to cheek smiles for no particular reason.

Birthdays. Days set side to commemorate when someone special to us entered the earth. We celebrate with gifts and cards, parties and dinners, cakes and candles, songs and wishes.

From the first glance of our newborn’s squishy face, the day they appeared becomes a day on the calendar marked with stars and exclamation points.

But what about when that someone has left the earth? What do we earthy vessels do with the day? That day we telephoned and sent cards and wrapped gifts and made cakes?

Today is my momma’s birthday.

She once said that we all know our birthdays but the anniversary of our death passes every year and we never know it. Her words left me feeling uneasy and strangely somber. Maybe it was a foreshadowing. Or maybe it was just Momma.

I wonder if birthdays are celebrated in Heaven. Or if it doesn’t matter anymore because the true birthday would be the day someone enters Heaven.

That same day we think of as the death day. The other day on the stone. The day after the dash.

Today is my momma’s fifth birthday in Heaven. My fifth one without her here.

The fifth time I won’t call her. The fifth time we won’t be up on the weekend to visit.

The fifth time I won’t apologize for not getting a card in the mail on time. The fifth time I won’t sit and write her a letter instead, letting her know how much I love her.

So I’ll sit here and cry and tell anyone willing to read how much I love her.

But I can never say “loved” like I hear people say referring to those who have passed on.

Because I still love her as much as I ever did.

The little girl me loves her as I look up while she puts her lipstick on me, then teaches me how to blot.

The teenage me loves her as we go shopping and sit around the den laughing with my friends.

The young adult me loves her as she watches me go out into the world all while holding on loosely. And yelling, “Don’t forget your lipstick!”

The young wife me loves her as she tells me how she loves her new son.

The new mommy me loves her as she kisses her grandbabies’ tiny heads.

The grown up me loves her as one of my best friends.

My card to Heaven would say:

Happy Birthday Momma!! The earth was a better place because you were here. I’m so thankful to have had you with me. And more thankful that I know where you are now. I love you. Forever and always, Vic

With so many challenges and trials of life, often contentment is replaced by grumbling, complaining, feelings of dissatisfaction and emptiness. This past year, I confess I have experienced more of the latter than the former.

But recently, I gazed into my living room- my own little world -and I glanced upon what was right and beautiful and amazing about my life.

Not an extremely out-of-the ordinary evening – but I’ve found that family time gets more scattered as children get older and our lives get busier, as little people grow and develop their own friendships. But this night, my family was all in one place. Even my special-needs son, who for so long would not stay in the room during family time. A little thing that many take for granted, but to which others can relate.

As I was finishing up the dinner dishes (actually just stacking them to do later as not to miss this precious time), scooping ice cream and ever-so-sneakingly squirting sweet-boy’s meds in his (don’t judge me, it’s the only way he’ll take it)- I stopped.

And I breathed a prayer of thanks to the Lord. I absorbed the feeling of all-is-right-with-the world. I let out sigh of praise. For the moment. For being able to serve my family. For being where I love, with those I love.

I handed out bowls and then I fed my precious little boy ice cream laced with Amoxicillin. Then I snuggled up next to my youngest and took out some knitting. A movie played but my husband was the only one really watching. My oldest son did schoolwork, my daughter scrolled on her phone until she fell asleep, my youngest watched football videos on my phone that has no sound and my sweet boy began to doze off next to his daddy.

But we were together in the moment. I have set a goal this year to be more intentional. To live fully in each moment God has given me. To be content whatever the circumstances. . Discontentment seethes of ungratefulness. And I have so much to be grateful for.

Like most of us, I get so distracted and preoccupied with life. I am like Martha when Jesus said, “You are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her.”

Many times, it’s about choosing what is better. Though there was still much to be done and always more waiting, this was what was better.

And as I lingered in the presence of my treasures in the room that night, I realized it’s not about the activity taking place. It’s about presence.